For example, when I foolishly assumed that this headache couldn't get any worse, I totally forgot about the sharp stabbing pains I used to get pre-surgery. So now it's like, yea, my head, it freaking hur-HOLY CRAP MY HEAD-ts. Like the ice-pick I have envisioned utilizing so many times in the past 15 days.

Or like how I assumed that my doctor leaving town without calling with my MRI results was the dumbest thing she'd do. Wrong again.

Apparently my angry message yesterday was reason enough to get her moving. Kind of. That is, the nurse must have called her, relayed my message, and then read her the radiology report. She then must have told the nurse to call me with her recommendations. This idea is reasonable-ish in theory, but in practice, it breaks down in a number of ways. Let me articulate them for you:

1) SHE'S NEVER SEEN THE MRI. So basically, she has no idea what's happening. This, to me, is a huge problem.

2) The nurse doesn't know me, and therefore doesn't have any idea what the doctor is talking about when she gives advice.

3) The doctor cannot compare to old MRIs so when the radiologist observed that my right sinus cavities were, as always, completely congested (we do not understand this, but on every single one of the 10+ MRIs I've had since age 13, it has shown up, I have seen 2 ENTs for this, both assured me I'm fine), the doctor heard that and decided that TA-DA! we've found the source of the occipital headaches. Which it's not. Because I don't have sinus pressure. Which she would know if she looked at any of my previous MRIs. ANY OF THEM.

4) If she had spent one moment looking at the radiology report herself she might have noticed a glaring error or two. Like perhaps how the radiologist DIDN'T NOTICE THE CHIARI. Let me explain. While almost 11 months ago I had surgery, my brain still hangs down approximately 10mm lower than it is supposed to. Rather obviously I might note, since I saw the MRI myself tonight. And oh, also, there just so happens to be a substantial chunk of my skull missing. And since no where on the prescription does it indicate that I have Chiari or that I had the surgery, this is a HUGE error on the part of the radiologist. Like HUGE. I'm sorry, it casts a shadow of doubt on a lot of it for me. I cannot trust that all the structures are intact and healthy when you failed to notice that they're, well, not. Slappy and I both immediately said "whoa" when we saw the first side view where the bone is missing because holy crap there's a big piece of bone missing and anyone should notice that. ESPECIALLY a radiologist.

5) The doctor would actually be able to answer questions. Instead, I got a nurse telling me that there's nothing to be done. That I will not be given more pain medication (which I did not ask for, by the way) and that I don't need to schedule another appointment because there's nothing to do. If the pain gets bad, I can go to the ER, but that my doctor will be out of town for 10 days, so she won't be contactable no matter what. And no, no one is covering for her. Her office is just shut down.

Now, if you'll excuse me, I'm off to find a real ice pick.

But seriously, Slappy really stepped up today and spoke to a pediatric neurologist, who spoke with my neurosurgeon's nurse, who is going to make sure my neurosurgeon looks at the MRI himself tomorrow. The pediatric neurologist also offered to look at the MRIs in addition and gave us a reference to a "fucking awesome" adult neurologist.

In addition, my friend Daisy Duke, Attorney-at-Law, spent a bunch of time (for free because she's a rockstar) trying to get USC to, as it turns out, find, and then send me my medical records. Did I mention she's a rockstar? Because she is.

All hope is not lost, but damned if it isn't buried deeply beneath a big pile of doctor bullshit.

13
comments:

stacey
said...

holy hell. I am so sorry that you are having to go through this. It is unacceptable. :( I hope somehow these other people will help ya!!

Her office is just shut down and no one is covering??? Words cannot describe the amount of anger I would have in your shoes. But YAY for Slappy, sounds like he is making some progress for you. I'm glad you have him.

This is bullshit, and the doctor sucks. Mom had a similar story. She wasn't getting air into her lungs years ago, and a dr found a sinus infection. It was in her (erythmoid?) inner sinus, so there was no pressure, and in her case no pain, just a long-term infection that wasn't good for her.

Eventually they fixed that, BUT Mom was still sick. THEN they found her bi-pap machine was set as a c-pap and suffocating her at night. But they could only go to the creative diagnosis when the boring diagnosis turned out to be wrong.

I'm glad you have Slappy, and I hope you can get some relief. My friend with the cluster headaches was going to kill herself. She went to a headache specialist, but she didn't have a diagnosis that anyone could point to.

Go Slappy!!!! Go Daisy Duke!!! and go Katie cause you're not taking this crap they're dishing or not dishing out. So happy Slappy is in a position to cut through some red tape. I never heard of a Dr. office just shutting down. God knew what he was doing when he paired you and Slappy up. You're still in my prayers for ultimate relief. My daughter asks about you daily. She is definitely in your corner.

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About Me

I'm a 26 year old former teacher turned full time graduate student. I live in Southern California after a 3 year stint in New Orleans with my husband Slappy (formerly The Fiance) and our cats (yea, we're those people).
In February of 2006 I was diagnosed with Chiari Malformation, which is a fancy way of saying that my brain was too big for my skull (get it? overflowing brain). On November 27th, 2007 I had brain surgery which allows my brain to exist indefinitely in my spinal canal. 13 staples, one cow heart lining and a multitude of doctors and medications later, I'm living a much improved decompressed life.